Friday, August 28, 2009
I am proud to present the official website of GPOD (Global Coalition of Parents of Children who are Deaf or Hard of Hearing). I am the only member without an organization to represent, I just kind of represent the community I've met through the internet. But perhaps I am a prime example of how powerful an organization like GPOD can be in support of a motivated parent.
You see, the work that I have been sweating through in Italy in regard to the project involving Newborn Hearing Screening and the Italian Pediatric Federation has been assisted by my contact with incredible mom advocates like Ann Porter (Aussie Deaf Kids), Leeanne Seaver and Janet DesGeorges (Hands & Voices), who facilitated my access to resources. Information is Power.
GPOD represents an opportunity of creating a worldwide web bank of resources and information in Deafness from Parent to Parent.
I present you with our first GPOD "Newsletter" which you will be receiving if you left your email address with us upon completion of the survey, which to date has 444 responses from parents worldwide.
Thank you so much for your support and for sharing your concerns, so that we can all work together to improve a system that so lacks a parental voice.
These are exciting times as more and more parents of deaf or hard of hearing children are joining efforts to improve Newborn Hearing Screening and Early Intervention Systems according to a more family-centered approach! In June 2008, parent leader advocates from Hands & Voices, Aussie Deaf Kids and NDCS invited several other parent organizations present at an international conference on universal newborn hearing screening (UNHS), where the overall concern was that the emphasis on identifying children with hearing loss was lacking the equally important need to support their families with information and a strong network, so they could in turn provide effective support for their children.
This meeting led to the creation of GPOD.
The Global Coalition of Parents of Children who are Deaf or Hard of Hearing (GPOD) is an international collaboration of parent groups dedicated to promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf or hard of hearing child throughout the world.
Based on the premise that essentially, we want “the system” to recognize the needs and concerns of the families it’s designed to serve, GPOD has created a global survey to be translated in more languages so as to truly reach as many nations as possible to produce parental feedback that will in fact shape future UNHS services. Help us inform professionals and policy makers throughout the world on the best ways to support families with a deaf child.
If you have not already done so, we would appreciate it if you could take 10 minutes to complete our survey to help us understand the support needs and experiences of your family, by clicking here. Special thanks to Rachel Chaikof for designing our GPOD logo. We have established our roots, now it is up to you to help us grow...
The following is a list of organizations that the Global Parents of Deaf Children Coalition (GPOD) have been contacted by, and/or in communication and connected with, as we have journeyed together organizationally from around the globe to make a difference in the lives of our children:
Aussie Deaf Kids
Web address: http://www.aussiedeafkids.org.au/
Deaf Children Australia
Web address: http://www.deafchildrenaustralia.org.au/
Union Nationale des Associations de Parents d'Enfants Déficients Auditifs
Web address: http://www.unapeda.asso.fr/
Dai Genitori ai Genitori
NZ Federation for Deaf Children Inc
Web address: http://www.deafchildren.org.nz/
National Deaf Children's Society
Web address: http://www.ndcs.org.uk/
Hands & Voices
Web address: http://www.handsandvoices.org/
If your organization or association would like to join GPOD, please send an email with your group’s website and contact information.
The Time is Now,
Thursday, August 27, 2009
Today was an interesting day. We picked my mom and step-father up from the airport in Rome and took them to their hotel- my mom's just itching to shop and my step-father's camped out on the beach. Then we picked up Jordan's gift-Wii accessories and game and went to pick up the kids from the mil. I saw my 13 year old son and showered him with birthday loving. He humbly accepted and proceeded to show me the loot accumulated. Not too shabby.
I took a long look at him and would have gotten all teary-eyed, but he started making demands, talking back and insisting that his demands be met. He's been pulling this back-talk stuff a lot lately and it's starting to get on my nerves, also because he'll talk back, realize he's being an instigator and then suddenly say something cute just as I'm tempted to whoop his butt. That floors me and I have no idea how to react. Such an unsettling sensation to be outsmarted by a TEENAGER! His latest thing is, "Mom, let me see you smile!" with this horrifying I'm-messing-with-ya grin on his face. I'm weak.
I'm weak and it's just beginning.
We all went to dinner tonight at the beach, and he spent half and hour complaining that he wanted a candle. I said, "Jordan, you are not having a party tonight, no cake, you'll have it when you go back to school with all of your friends!" (the dreaded summer birthday-how many summer parties can you have when only half the people show up because the other half are away on vacation?)
I tortured him with the "No candle" thing until finally it was dessert time. We were still arguing when there was a sudden and complete blackout in the restaurant. There was a storm blowing up, so I honestly thought the power had gone out. Then a couple of lights went on, this Italian waitress started belting out "Happy Birthday" in Italian like opera-style and the 200 people in the restaurant started singing with her as she brought three scoops of vanilla ice-cream out to Jordan with the three candles I had given her.
Oh God, the look on Jordan's face when he realized it was coming his way! And then came the smile as he proceeded to blow out the candles. When the lights came on, I said, "Jordan, what did you wish for?"
He said, "Who had time to wish? I was scared to death!"
I smiled, "The element of surprise, my son. Never underestimate your mother, and I will try never to underestimate you."
And so we begin the teenage years together...give us strength. lol.
Sunday, August 23, 2009
It's kind of a particular time in my life where I have been trying to maintain an equilibrium and dedicate the right amount of time to everyone and everything while experiencing a lot of emotions. There have been so many things I've wanted to write about involving deafness and other things, but I have like this block thing going on. Maybe it's emotional overload.
I've always been the type of person who has tried to please everyone around me. Only in that way, have I been able to achieve peace. I guess it's a form of controlling my environment. But then things change and you realize you have no more control, nor do you have certain responsibilities towards certain people as much as you still feel the need to unconditionally love them. People can choose not to want that love, especially when that love may block them from becoming the person they want to be.
Unconditionally loving someone is letting go and accepting the fact that that person doesn't need your love anymore to grow and move on. But a strange thing happens when you give love unconditionally without any expectations...you yourself grow and learn to stand on your own two feet.
So, here I am standing on my own two feet. The return to Tuscany after the fresh American air has been truly difficult this time. My only solace has been the sea..I do realize that sounds dramatic, but it's the truth. Well, not entirely. Jordan and Sofia have grown and matured during the summer. Whereas Jordan and I used to have some serious summer homework battles, he now takes out his books and pencil-case and sits down to work. Sofia sits across from him at the kitchen table and after twenty minutes of sibling rivalry, they manage to do ten minutes of homework. I kind of just sit back, referee and observe them thinking how unbelievably fast my kids have grown. Having two kids was the best decision we ever made.
Somehow, when I think about my kids...the writer's block starts to dissolve.
Thursday, August 20, 2009
I found this article in the Healthy Hearing newsletter and wanted to share it with all of the parents whose children are at one time or another self-conscious about their hearing aids or cochlear implants...
Winter's Tale: What a dolphin and a little girl teach us about hearing aids
Monday, August 17th 2009
Being born with hearing loss made 10-year-old McKenna McGough feel like a fish out of water. "Lots of my friends didn't have hearing aids, and it made me feel really uncomfortable about it," the Rowlett, TX girl told the Dallas-Forth Worth TV station KXAS.
So maybe it was fitting that encouragement to wear her hearing aids openly and without embarrassment came from the water as well, namely from an injured dolphin named Winter.
On a trip to the Clearwater, FL Marine Aquarium two years ago, McKenna met Winter, who lost her tail in a crab trap. Seeing the dolphin being fitted with a prosthetic tail was all the inspiration the little girl needed. "She's helped me in not being afraid to be different," McKenna said. "She's not shy to show her stump, so why should I be shy to show my hearing aid?"
That’s the spirit, McKenna. Hopefully other folks can draw inspiration from that spunky attitude too.
Monday, August 17, 2009
Well, the entire country of Italy has been on holiday for the past week, so it's been difficult for me to get it together. I appreciated the responses to the last blog, it was so interesting and really beautiful to read about everyone's love experiences. It ain't easy...*smile*
Two years ago I was the fortunate one to have found myself in the middle of a couple falling in love. Lorenzo- 24 years old, deaf, wears hearing aids, very auto-ironic and intelligent, champion handball player- just spent a couple of weeks in Norwegia for a competition...and Virginia- 19 years old, known her since she was about 8, plays volleyball and had a MAJOR crush on Lorenzo.
When I told Virginia about the last blog post, I asked her if she wouldn't mind giving me some input from a hearing person's perspective. Lorenzo still hasn't touched base...Men!
This is what Virginia had to say...(translation)
...anyway, as far as I'm concerned, it was love at first sight, so I never saw Lorenzo's deafness as an issue. Sometimes I completely forget that he can't hear...it may happen that I call him from another room and after a couple of times that I keep calling him and he doesn't respond, I remember he's deaf. But really it has never been a problem for me. It's never been an issue, mostly because he is intelligent and is able to joke about his own disability...if you truly fall in love, you can see no problems, in any case.
I LOVE THEM!!!!
Wednesday, August 12, 2009
I read this post on one of the Italian forums and of course I got to thinking...
I would like to ask you a simple question.
I know that many of you are married or have significant others who are hearing, but maybe those relationships began before you became deaf, giving you the time to allow your partner to know you as a hearing person before you actually had a hearing loss. Instead, I would like to know about those of you who are in a relationship with a hearing person who accepted you and loved you knowing you were deaf.
How many of you, once deaf, found a hearing partner who accepted you for who you are?
What were your fears in regard to the relationship and how did your partner accept you?
What happened when your partner "discovered" you were deaf also because of your speech?
I read this post through the eyes of a mom with a deaf son. Maybe one day he will ask himself these same questions, but I don't think so. I believe that each person he meets knows exactly who he is in terms of his deafness and that it does not define who he is to the point that it will make a difference in any relationship he may find.
But...I could be wrong. Only time will tell.
Saturday, August 8, 2009
I receive a regular email from "Healthy Hearing" and would like to share an article they posted called "HEARING SOLUTIONS - Tips for Hearing in Noise." (Click to see the full article)
These were the tips listed for better communication strategies when dining out:
You can also temper the effects of challenging listening conditions by using effective communication strategies. Think about the last time you went to a restaurant and found yourself bombarded by noise: other people's conversation, mood music in the background, clanging dishes and cutlery, noise from the kitchen, etc. Now think about what strategies you could use to minimize the difficulties you have the next time you dine out. You may find these suggestions helpful:
Plan ahead by picking a quieter restaurant. For example, unless you're content to read the captioning on the televisions, avoid sports bars. Try to find carpeted restaurants that have chairs with rollers on the legs (thus preventing an annoying scraping sound when they are moved), plants, and sound absorbent materials on the tables and walls.
-Make reservations ahead of time, and ask for accommodations.
-Go to your favorite restaurants, so you already know their specialties and options, such as choices of salad dressings or side dishes.
-Pick the best day and time (not Friday nights!) to dine out.
-Look on the restaurant's website to preview the menu.
-Choose to dine with a smaller number of dining partners.
-Pick a table in the least noisy part of the restaurant (e.g., away from the kitchen, bar, wait service stations, etc.).
-Ask for seating in a well-lit area.
-Remember that even people with normal hearing experience greater difficulty in a noisy listening environment than they do in a quiet listening environment. So, don't expect to do as well with your hearing aids in the noisy restaurant as you do in the quiet of your home.
-Sit with your back to the window, so that lighting is on the speaker's face, not in your eyes.
-Request that staff turn down background music (you are probably not the only patron bothered by the volume of the music).
-Tell the host/hostess and waiter/waitress, as well as your dining companions, that you have a hearing loss and that it will help you if they slow down a bit, speak a little bit louder, and face you directly.
-When possible, indicate choices before you're asked. Examples: "I'd like a salad with Italian dressing" or "I would like a burger, no fries."
-Ask the waiter/waitress for a printed list of the specials of the day.
-Use directional microphones and/or an FM system. If your hearing aids are set to directional, be sure to sit with your back to the main noise source.
-If restaurant dining is for business, request another place to meet.
-Relax/breathe and enjoy the fine food and the company, even if you don't catch every word.
And moms...feel free to begin using this information to empower your kids!
Tuesday, August 4, 2009
I have spent the past four weeks being
I have done it all with family, friends and my kids.
I have done it all with my family, friends and kids.
And now it is time to get back to work.
There is so much to be done.
"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - -- Shel silverstein